Empowering Communities to End HIV and Aids
Keynote Address at 13th Singapore AIDS Conference, 10 Dec 2022
Good morning, everyone!
Thank you to the organising committee for giving me this privilege to share a few words to open this important conference, the 13th Singapore AIDS Conference.
Before I continue, some of you may know that I wear my hat for mental health and wellbeing no matter where I go. So if I may, I’d like to start my sharing with a simple act of acknowledging each other’s presence here by taking 3 deep breaths together. Would you care to join me? If you are called to it, you may close your eyes or just lower and soften your gaze — and take 3 deep breaths at your own pace.
<Pause. Breathing>
Thank you for coming together in breaths to be more present with each other today and to affirm this community that we are — here in this room, and beyond, in advocating for a better future among people affected by, or are living with HIV. Only humans can breathe by volition, so in intentionally breathing together, we are also affirming our shared humanity.
It is still surreal for me that it was only 16 years ago when I was in that deep dark place of despair with a broken heart, a broken marriage, a broken business and all of $16 in my bank account. Never would I have imagined that that colossal collapse would lead me on an unexpected trajectory of fervent changemaking and community building that has led me to be here with you today.
Nor would I have imagined being appointed by the President of Singapore as a Nominated Member of Parliament for two years from 2018 to 2020 championing relentlessly for what I call the 3Ms of my heart: mental health, marginalised communities and Mother Earth. (I also invited the House to take 3 deep breaths together in my maiden speech!)
I still don’t know how I did it but according to CNA, I spoke at every parliamentary sitting in those two years. To be exact, thanks to the research undertaken for a book I recently edited on the NMP scheme, I’ve been told that I delivered 58 speeches and raised 147 parliamentary questions on youth activism, mental health, migrant workers, as well as the vulnerabilities that the LGBTQ+ community and sex workers face in Singapore. I sometimes think the collapse may have unleashed this benign ‘beast’ in me to speak up for those in our midst whose voices have been muted by stigma, discrimination and prejudice.
Like Brendan*, a dear friend who first shared about his HIV condition with me in a yoga retreat in Bali more than 10 years ago. The fear of being shunned was palpable for him. Having been given the trust to hold space with love, and unconditional acceptance for Brendan and a few dear friends who are living with HIV, it’s an honour for me to extend this space to all of you here.
Empowering Communities to End HIV and AIDS
Holding space with love and acceptance is what makes a group of people coming together become a community.
It’s why the theme for this year’s Singapore AIDS Conference, “Empowering Communities to End HIV and AIDS”, resonates deeply with me.
I believe that there is no power for change greater than a community discovering what it cares about, informed by their lived realities. Getting the community involved in organising their own destiny is what inspired me to initiate changemaking initiatives like SG Mental Health Matters, A Good Space Co-operative and Hush TeaBar by bringing people together. These initiatives are run and led by people with lived experiences who seek to create change in ways that are meaningful to them and the communities which they belong to.
Take for example SG Mental Health Matters. We are a community of individuals with lived experience who are advocating for change in mental health policies in Singapore, which started with my Budget 2020 debates. With perspectives from survivors of suicide, people in recovery from substance dependence, individuals who have faced mental health challenges, mental health physicians and healthcare workers, our work to advocate for changes in policy is rooted in self-care and love for each other. We have since conducted two public consultations, written policy commentaries, tracked parliamentary questions and debates on mental health every month and submitted our policy recommendation for a Permanent Mental Wellbeing Office under the Prime Minister’s Office directly to the Prime Minister and relevant Ministers. The Government has confirmed that this recommendation is being given due consideration in the last Budget (we know on the ground that it’s happening). But what’s so beautiful for me to watch is that the work empowers the community but is not the end, the community is. When we take care of each other, we also leverage each other’s strengths to do the best work possible for change. Then the power of the collective is unleashed.
I have seen how this has been the driving force for change in the HIV response as well. Communities have been at the forefront of the response to HIV, and this includes those who are affected by, as well as those caring for people living with HIV. For example, in the late 80s, we saw this in the die-ins and protests by activists from ACT UP in the United States to demand attention from policymakers when those in power turned a blind eye to the rising death toll from AIDS among vulnerable communities. Community is much more than belonging to something; it’s about doing something together that makes belonging matter.
I also think of the everyday acts of activism from social workers, nurses and doctors who choose to put the humanity of those living with HIV at the forefront of all decisions notwithstanding prevailing so-called ‘best practices’ or guidelines. Such as healthcare workers going beyond the call of duty to help people living with HIV get the treatment and care they need, or fighting against discriminatory practices on behalf of their patients.
Our very own retired nurse, Singaporean Iris Verghese now 76 is one of these everyday heroes who as a young nurse in the 80s during the outbreak drank from the same cup of a self-stigmatising patient to prove to him that HIV/AIDs is not transmissible through saliva. She also hugged clients who were often horribly ostracised because of the stigma.
Today, we see activism in new forms — from the day-to-day services that communities lead to benefit their peers, to having a seat at the policy table in many settings. Communities have been shown to be competent and effective in leading the charge from within. I know this from my work with the migrant workers at A Good Space and the Deaf community at Hush TeaBar.
During the pandemic, migrant workers with support from groups like A Good Space were helping each other within the dormitories including providing peer support for their mental health which had understandably plunged to dangerously low levels. Since then, peer support training is being given by state agencies like Migrant Worker Centre, and we see migrant worker leaders now having a seat and voice at national efforts like the Listening Living Labs under A Good Space and even state-directed ones.
I was therefore delighted to learn that Thailand announced in June this year the formal funding of community-led health services (CLHS) as public health services, following success across years of implementation. Today, community health workers, including gay, bisexual and other men who have sex with men, transgender women, and people who use drugs, can be certified in Thailand as community health workers to provide services to peers in their own communities.
We know that the power of the community to create health and wellbeing is far greater than a physician, clinic or hospital. But this isn’t all just anecdotal evidence. A review paper published in Dec last year found that peer-led and community-led approaches to HIV services delivery are not only cost-effective but also ensure that services meet the needs of communities that can lead to greater equity and empowerment for those who are affected by HIV.
Advocating for Equality
Yes, let’s now talk about equity and equality. I really like the use of the strong verb, ‘EQUALIZE’ by UNAIDS as the clarion call for World AIDS Day this year urging us to address the inequalities which are holding back in ending AIDS.
Here in Singapore, part of ending such inequalities is reviewing policies and laws that have impacted marginalised communities — something I spent all my time as an NMP advocating for in and outside of Parliament, and continue to do so through my different platforms since stepping down.
First, much consideration needs to be given to the intersection of mental health and marginalised communities. The minority stress theory posits that minorities, including key populations affected by HIV and AIDS, are disproportionately impacted by stigma and other stressors associated with their minority identities. Research has shown that this heightens the risk of poorer mental health, which is in turn associated with behaviours associated with increased risks of acquiring HIV and other sexually transmitted infections.
Another good friend, Robert*, struggled with coming to terms with his attraction to other guys in school because he felt he would be ostracised as a gay person so he tried different ways to convert himself through religion, dating girls etc which made him feel extremely lonely. That led him to rely on finding intimacy and self esteem through sex and numbed himself with drugs. At 21, he found himself infected with HIV.
At the 2020 Committee of Supply debate, working with some members of the LGBTQ community, I highlighted that WHO had suggested the LGBTQ+ community be treated as a vulnerable group in mental health because of the ‘double stigma’. We also asked for all personnel in mental healthcare, including those in community settings, to be trained in LGBTQ+ issues, as well as appointing diversity officers across healthcare and social service sectors as a resource for professionals to tap on to better understand LGBTQ issues.
The disproportionate barriers to mental health services, and the impact of stigma on the mental health of LGBTQ+ individuals are close to my heart which, as a Minister once said to me, “you just keep at it so relentlessly” but thankfully another said ‘you bring humanity to Parliament’. How could I not? Robert is not the first story I know, and won’t be the last unless we make the urgent changes needed so keep at it I very much shall!
Second, we need to ensure that there are no barriers to accessing care, and adequate protections are in place against discrimination and violence for marginalised groups, many of whom are key populations impacted by HIV and AIDS. We often overlook the plight of transgender people and sex workers in the HIV response, and there is much more to be done for them. Trans-affirming healthcare services are still a distant reality, even though progress is being made through the efforts of community groups and in partnership with institutions that care. During the debate on the amendments to the Women’s Charter, I worked with community leaders from Project X, and the T Project to highlight the good work that such groups are doing on the ground to support sex workers and transgender women, as well as the inequities that sex workers face in seeking justice from violence and exploitation. We recommended in Parliament that sex workers should be given immunity and protection when reporting violence and exploitation when approaching the police — they should not have to fear criminal charges or mistreatment from law enforcement, especially when they are disproportionately affected by violent crimes.
Third, we must also ensure that our broad-based, population-level policies are evidence-based and serve every Singaporean, not just those with the means to access them.
In addition, Singapore’s HIV epidemic is characterised by transmission among not just marginalised or minority populations, but also older, heterosexual men.
And what about those who are less educated or have lower proficiency in English, how do we make sure they are not disadvantaged in accessing important and comprehensive sexual health education?
We must also strive to keep our sexual health and sexuality education constantly updated, and not shy away from issues like LGBTQ+ health, gender equality, consent, respect, and to lead sexually healthy lives. I called for a review of sexuality education in Parliament in 2020 and sincerely hope that this shall be done now with inclusion, not omissions, in light of the recent repeal of Section 377A.
There are many advances that have not been shared widely with the general public, such as undetectable = untransmittable, where people living with HIV and a suppressed viral load effectively cannot transmit HIV to their sexual partners.
If we are sincere about addressing stigma and ending HIV by 2030, these are actions we must take as soon as possible.
Closing
In closing, let me share with you the story of my Belgian friend, Dr Jean Louis Lamboray — a medical doctor who was working with the World Bank as a Senior Public Health Specialist and part of the team that created UNAIDS in the 90s. He went on to co-found a programme that successfully arrested the epidemic in a region of Thailand within 5 years through local responses by empowering these communities to take actions for themselves. Yet he famously shared that this project was also his biggest failure for he was not able to change the international strategy at the institutional level to mobilise local responses, with that success story. But the work transformed him immensely. He saw the power of communities to make change, even in the face of terrifying challenges, when they are given the opportunity to see their own strengths. Jean-Louis left the World Bank soon after to co-found a global NGO to co-create with communities around the world what he fondly calls ‘the positive epidemic’, a process that he formally calls Community Competence Cycle which I invited him to Singapore in 2019 to share with the community changemakers at A Good Space.
So let’s ‘EQUALIZE’ and begin this positive epidemic to end HIV and AIDS by investing in the strengths of every member within communities equally with supportive policies and resources. We need to do this with a fierce urgency that will remove structural barriers and build assets and capacity to enable the sustainable change needed.
As anthropologist Margaret Mead famously put in, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
We have to create what we want to be a part of. I want to thank you for coming together every year in the last 13 years for this important work of change for your community; it speaks volume of the greatness of a community that holds compassion, courage and commitment.
So amidst all the digits and numbers to be discussed today that are nevertheless important for public health work, I am sure we will not forget that every digit reflects a human life. That every life that hasn’t gotten access to testing as a result of stigma, every life that hasn’t been able to afford life-saving medication, and every life lost to HIV and AIDS is one too many.
Together, we can do so much. May the discussions today be filled with vigout, love and hope. I wish you a fruitful conference.
Thank you for listening, and thank you again to the Singapore AIDS Conference Organising Committee for having me — especially Rayner for your contribution to the preparation of this speech.
May you all be well. ❤